Friday, December 20, 2013

One of those days that, even as I go about my daily business of work and errands and chores, diabetes manages to steal. One of those days where words fail, because there's no story to tell, since it's not just one day but a representation of many.

The lethargy of blood sugar levels that stay relentlessly high. The vaguely queasy feeling that accompanies glucose and ketones. The monotony of pulling out the meter and obtaining that tiny bead of red every hour or two. The whirring thoughts, running through pump, site, insulin, illness, what else could it be. The shots, the site changes, the pump refills. The corrections, ad nauseam.

Intermingled with everyday life. Phone calls and reading and typing, interrupted by finger pokes and pump programming and shots and Ketostix. Interacting with friends and colleagues and strangers, all of them completely missing the undercurrent of the diabetes battle that is raging.

So normal to anyone watching. But under the surface, one of those days that diabetes rules.

One of those days that, ultimately, is best summed up in a picture rather than words. (Except for the alt text describing the picture, of course.)

Sunday, December 1, 2013

I've had 911 called for me twice during my lifetime. I was in grade six the first time this happened, and it had nothing to do with my diabetes.

My class was playing outdoor soccer. Unable to play safely due to my vision, I was on the playground swing set chatting with my educational assistant, swinging back and forth and pumping my legs as hard as I could. As a kid I always had a goal to swing as high as possible, despite the slight nervousness nagging at the back of my throughts that the swing might wrap around the metal pole supporting it if I went too high.

For reasons we never did determine (some sort of momentary loss of consciousness was suspected), when I had reached the apex of one of my pendulum swings I suddenly let go of both chains.

Predictably, I went flying. I soared a good 20 feet across the playground before landing. To this day I remember seeing a swirling mass of grey below me, time going in slow motion, not quite knowing what was happening and at the same time thinking, "I know I'm about to get hurt ..." and praying, "Please, God, don't let it be bad."

I don't remember landing. I do remember looking up and hearing my aide cry out. The next thing I remember is walking towards the school. My aide jumped off her swing and came bolting towards me, clamping her hand over my forehead and calling for help. As we continued to walk towards the school she talked to me, saying I was okay. I didn't understand what she was talking about until she momentarily lifted her hand from my forehead.

Her entire palm was completely red.

She clamped her hand down almost as soon as she had moved it, but in that split second I suddenly panicked and burst into tears. I had never seen so much blood. When we reached the school doors I wasn't even brought inside, but sat on the stairs while someone brought out a giant gauze pad. The entire pad turned red in a matter of seconds and was exchanged for another, and another. Once the bleeding was controlled enough that the gauze wasn't soaking through immediately, I was ushered into the office.

I didn't know it then, but my mom was being called. And so was 911. When the paramedics arrived I was mostly concerned with trying to stop crying and pulling away when they tried to clean the wound, which stung like mad. I sat in the office and could hear the bustle of my entire class outside, trying to peer in at me. The paramedics were mostly concerned with the possibility of a head injury.

They questioned me incessantly. Did I know where I was, who I was, what day it was, did I remember what happened. Then, they began to talk about my eyes with concern.

"Her eyes always do that," the school staff around me informed them.

"Are you sure?" one of the paramedics asked.

"Yes, she's legally blind; her eyes have always moved like that."

They were not convinced. "I don't know ..." one said as he looked into my eyes with concern.

I didn't have a good sense of the passage of time, but they spent a lot of time discussing my nystagmus. My mom got to the school just as I was being loaded into the ambulance. On the way to the hospital, the paramedics asked her if I had always had nystagmus, and she confirmed that I had. They advised her that, given my relatively complex medical history, I really should have a customized medical ID.

I spent the next few hours in emergency, where I remember feeling sick to my stomach, my blood sugar crashing low, getting annoyed at the oxygen mask covering my face, and the doctor stating that I didn't have a skull fracture but did have a mild concussion, and was lucky I hadn't broken my neck landing head-first like I had. Seven stitches later I went home to spend the rest of the day lying on the couch. The following morning I woke with my eyes swollen shut and was back in emergency. When I returned to school the next day I was a huge celebrity with the other kids, having been taken away by ambulance and leaving a puddle of blood in the middle of the playground.

And so it was that, at the age of 11, my parents signed me up for MedicAlert. They had bought me a medical ID bracelet when I was diagnosed with diabetes two years earlier—a bulky, gold bracelet with a giant red medical logo that said simply DIABETIC on the underside—that they had purchased at the drug store and made me wear, even though I hated it. After the swing incidence, they decided to take the paramedics' advice and get a bracelet that could be engraved with a customized message.

I remember standing in the kitchen having my wrist measured as my mom spoke on the phone with the company. When the bracelet arrived in the mail I thought it was far more appealing than my previous bracelet, and wore it without complaint. After clasping it on, a MedicAlert bracelet didn't leave my wrist for the next 20 years. I grew familiar with the weight of the bracelet around my wrist. I fiddled with the engraved tag, rather than my hair or nearby objects, when I was nervous or bored. The soft clink of the chain and tag against the desk surface as I worked because a subtle soundtrack to my years of school. In high school I had a friend who also wore a MedicAlert bracelet. We were the only two wearing them in our social circle, and I felt a sense of solidarity with her. Periodically, we would flip our bracelets over to compare the engravings. Whenever my bracelet was removed my wrist felt almost foreign, and I would have strange phantom sensations of the bracelet's weight and touch against my skin even in its absence.

Then, in early 2013, the bracelet broke. I'd had my share of bracelets break over the years, virtually always from swimming, where I would hit lane ropes with my wrist. Often, I would take it to a jewellers the same day to have the chain replaced. But this time around, the chain broke at random while I was going about my day, and I lost the tag to the streets or maze of public transit. I knew that I should call MedicAlert to get a new one. But I was always "too busy" and put it off. I went for nearly a year with no medical ID bracelet.

Several weeks ago I was riding the train when I started to feel a bit low. I tested at 3.3 mmol/L and popped two glucose tablets in my mouth. Twenty minutes later I was picking up groceries when I suddenly began to feel horrible. Within minutes I went from feeling fine to feeling lightheaded, the bustle of the store around me became muffled, and a vague tingling sensation spread through my entire body. Every time I took a step I felt like I might topple over. I tested and despite the two glucose tablets I'd taken earlier, I had dropped to 2.1 mmol/L. As I stood treating the low with five more glucose tablets, I closed my eyes and willed myself to feel better, at least enough so that I could walk without falling over. It took a good 20 minutes for my blood sugar to come back up and even longer for me to feel completely better. During those 20 minutes I was very aware that, should I collapse, I had no medical ID bracelet.

And so, I took the plunge and not only got a new medical ID bracelet, but switched brands for the first time in 20 years. I had been a member of MedicAlert since long before they charged for membership, and I wasn't at all sure I wanted to pay $60 a year for one. I also wanted to be able to order bracelets online, which I couldn't do with my (now non-existent) free membership. So, I ordered from Lauren's Hope instead. It took me a long time fiddling with wording to find something that fit and looked decent. I picked a grey medical emblem, because I like to be discreet. I ordered the cheapest chain possible, figuring that, if I liked it, I could order nicer ones later on. I also ordered a waterproof sports band with inserts that could be written on, so that I could wear them when I swam and not risk losing yet another bracelet to the pool.

When the bracelets arrived, I'll admit that I didn't immediately love it. I didn't dislike it, either. I'm picky about changes, especially after 20 years! The engraved tag was bigger than what I'm used to with MedicAlert bracelets. It's more reflective and shiny, too, which put me off at first, because I felt like it would draw attention to it. But, after a week of wearing it, I've grown to like it. It's very lightweight, and the grey medical emblem is pretty discreet. I like that, if I need to, I can order a new tag for around $25, and that I can order more chains to suit whatever mood or social situation I may be in.

The sports band is neat, too. It's a fabric and Velcro bracelet that
hold medical symbols and "Alert Inside" on the outside and contains two
small waterproof inserts that can be pulled out when the bracelet is
removed. I can't judge the quality of this since I haven't used it yet
(although the font on one of the inserts did smudge the moment I touched
it), and I've fabricated my own inserts on the computer, since the ones
the bracelet came with are way too small for me to write in. But the
bracelet is comfortable to wear and, I think, would be very noticeable
to any first aid staff or paramedics, especially while swimming.

Interestingly, I've discovered in the past week of wearing a medical ID bracelet that I think the bracelet is helpful in ways beyond simple identification in an emergency. Over the past nine months of not having one, I've sort of missed it.

The bracelet is a symbol that the wearer has one or more serious medical
condition, and some people hate making that information obvious to anyone who looks at them. Part of the idea behind bracelets from companies like Lauren's Hope is that you can turn the bracelet so that the medical tag is hidden and the pretty bracelet is the first thing people see. But I don't mind it being visible. I'm used to symbols, including any positive or negative connotations they may dredge up. I've used a white cane since I was eight, and over the years have become comfortable with how others might react or what they might think but leave unspoken. In some ways, the bracelet acts as a similar symbol, and in some ways can help make some otherwise awkward situations easier for me.

I have written before about how hard it can be to turn down food. But, somehow, I find the bracelet makes it easier for me to stand up for myself under peer pressure. The other day we had a cake at work to celebrate November staff birthdays. Someone went to hand me a plate, and I shook my head and said, "No, I'm not having any, thanks."

Surprisingly, the person simply handed the plate to someone else. As we all sat around the table, everyone eating except me, someone across from me piped up and said, "Is it because of the sugar that you're not eating it?"

Well, technically it was because of the carbohydrates, but I simply said, "Yes, that's why." No one even attempted to cajole or pressure me into having a piece, which I think is a first for me in this office.

Maybe it's simply that my co-workers are beginning to learn that I typically don't accept cake. But when I refused (which I had made up my mind to do even before showing up to the staff room), I did so more firmly than I usually do. As I sat there with the cake being cut and plate coming ever closer, I fiddled with my bracelet in my childhood nervous habit, and the weight of the metal on my skin was like the reassuring touch. Yes, the bracelet confirmed, you are doing the right thing for you health.Sometimes, that little reminder at the right moment is what makes the difference between me accepting and refusing a high-carbohydrate treat.

And who knows, maybe the person handing me the plate caught sight of the bracelet, too, and was reminded about why I might be declining.

I'm glad to have a medical ID bracelet back on my wrist. Whether it's to communicate with paramedics during a true emergency, or just as a reminder to myself and others that I need to take my health seriously, it's been with me for almost my entire life, and is what I'm most comfortable with.

Sunday, November 17, 2013

This post is in honour of World Prematurity Day which falls on today, November 17.

Finished cutting, I put the scissors down on the table. Keeping the piece of paper I'm working with in the air in front of my face, I reach for the spot where I had placed the glue stick a few moments earlier. My hand finds empty air. I move the paper aside and look down at the table, but it's impossible to pick out the glue stick amidst the scattered mess of craft supplies.

"Where's the glue?" I ask no one in particular.

A few seconds later the stick appears in my hand. "Here," says the classmate sitting next to me. I thank her and hold the paper up again, getting as close to it as my nose will allow and tilting my head so that I don't block the light.

"How come you can't see very well?" asks the girl, watching me work.

My answer is only a little delayed as I concentrate on carefully lining up the objects I am pasting. "I was born too early and the treatment I needed in the hospital damaged my eyes."

"I don't know," I say, and feel a moment of anger at the doctors who, I assume, must have made some sort of mistake.

I was six, and this is the first memory I have of explaining my eye condition and premature birth to another person.

As far back as I can remember, I
have always known that I was born premature. I grew up knowing that my visual impairment was from retinopathy of prematurity (ROP)—damage to my retinas thought to be caused, in part, by receiving high concentrations of oxygen. I grew up knowing that the chronic cough I had was from scarring in my lungs caused by a combination of prematurity and treatments I'd needed to help me breathe.

Growing up, I had scars that I would
periodically ask my parents about.

"Those are from needles you had in
your head to feed you," my dad would tell me when I asked about the little round scars on my scalp where no hair grew.

"That's from when your lungs were filling with fluid and doctors had to do a treatment to save your life," my mom would explain when
I asked about the scar on my chest.

"That's from a bad infection you had
in the hospital," she said of the large scar on my ankle.

I didn't really believe my parents sometimes. Especially my dad's assertion that I'd had needles in my head to feed me. I thought he was making it up—until I was older and discovered that babies really do get IVs in their scalp.

Today, I can't imagine what my parents must have gone through. Both were younger than I am now, and I was their first child. And instead of being thrown into happy parenthood, they were thrown into the months-long journey that is prematurity.

My parents are sparse on details, but have told me what they remember. I was born three months premature in late 1981. My actual due date was not until early 1982. My dad tells of how, when I was born, I was small enough that he
could hold me in one hand. I weighed two pounds and six ounces. My
experiences after birth were starkly different from most newborns.

I was put on a ventilator and spent months in an incubator in the neonatal intensive care unit (NICU). I faced severe breathing problems, blood infections, heart issues, and other complications. I went into cardiac arrest at least once. It was nearly five months before I finally came home. Even then, I remained on a breathing monitor for several months after my discharge. Fortunately, the alarm that would sound if I stopped breathing never went off.

Had I been born a couple of decades earlier the medical technology to save my life would not have been available.

During my childhood, prematurity was sometimes brought up at family gatherings. An aunt or uncle would relate a story from when I was a baby. I always had a sense that I was somehow special. But prematurity was always a vague concept to me. I had never seen a NICU except in blurry Polaroid photographs of me in an incubator, covered in tape and tubing. I had never seen a premature infant, or known anyone
who gave birth to one. The only other preemie I knew was a boy a few years younger than me who had the same eye condition, but had been left with no residual vision, not even light perception.

When I was in high school I began to watch E.R. on television with my mom. One episode we sat watching together (her on the couch, me sitting on a footstool six inches from the TV screen) took place in the NICU. Periodically, my mom would make a comment, or I would ask a question.

"Did I cry in the incubator?"

"Not at first. But when you were older, you did. Your cries were so quiet the nurses could hardly hear you."

After one question I commented in reply, "That's cool."

"No, it's not," my mom retorted, suddenly serious. "There were some really scary moments." I didn't ask any more questions after that. I suddenly realized, perhaps for the first time, that I really could have died.

As I grew older I began to realize that doctors had not made some sort of mistake. They had made a choice. Give me higher concentrations of oxygen and risk blindness, or give me lower concentrations of oxygen and risk death. I am forever grateful for them for choosing the former.

At the age of 17, in my second-to-last year of high school, I was told by my ophthalmologist that I had the beginnings of cataracts forming, and that they were a complication of ROP. I was a bit stunned. I had assumed that prematurity was just an interesting relic of my past, that the damage had been done. I had never thought that it could continue to crop up and affect me decades later.

As a teenager I used to sneak volumes of our family's Encyclopaedia Britannica
into my bedroom to look up entries under my video magnifier. Among other things (including a failed attempt to read the entire tome from A to Z), I remember
looking up information about premature birth and ROP. Through those
entries I learned about the NICU, ventilators, and the
possible complications of prematurity. Complications beyond visual impairment, including cerebral palsy, hearing impairment, learning disabilities, and neurological conditions. I was mortified one day when my
mom walked into my room without knocking and saw, magnified on the video
magnifier screen, what I was reading. She was completely understanding, though, and said I shouldn't be
embarrassed about wanting to learn about prematurity.

Shortly after I was told I had cataracts I logged on to the still-fledgling internet through our dial-up connection and found a listserv for adults with retinopathy of prematurity. Through this list I discovered that there were a wide range of complications that could occur in adulthood, everything from cataracts to glaucoma to retinal detachments. I still participate on this same discussion list today, although its location has been shuffled around several times as services change and moderators come and go. As an adult I have begun to experience more of these late ROP complications. In addition to cataracts, I have experienced retinal tears requiring several laser surgeries and, most recently, been referred to a glaucoma specialist for monitoring.

During the past few years many of my friends and peers have begun families. And, suddenly, premature birth has become very real to me. Through e-mails and Facebook posts I have seen the journeys of at least five preemies born over the past few years. Some only a few weeks premature, some many months premature. I know of twins born extremely early who, at this moment, are in the NICU, where they will be for many months to come.

In adulthood, I've come to realize how much of a miracle preemies are.
How close to death some of us came and still survived. And how strong
and resilient preemies are, even into adulthood. How some of us face
lifelong challenges and still thrive.

And not just preemies. Their parents who share the journey with them, sometimes into their adult life. And the doctors who go through lengths to save their life, sometimes facing tough choices in the process.

And, sadly, I've also come to realize how heartbreaking
preemies can be when, despite advanced medical care, some don't make it.

Of the preemie survivors who I have met as an adult, all have invariably expressed one sentiment, no matter what disabilities or challenges they face. They are grateful to be alive.

There is an award-winning documentary calledPreemie, which I stumbled upon about a year ago. It tells the story of four preemies and is directed by the father of one of those babies. After the opening credits there is a montage of words that coalesces into the word preemie.

Hope. Struggle. Uncertainty. Fear. Miracle. Strength.

I can't think of a better way of summing up the journey of prematurity than those six words. So, here's to all the preemies—past, present, and future—and to their parents, families, and doctors.

Monday, October 14, 2013

Lately, I have been trying to make a point of feeling gratitude. Every day, I try to stop and think of one or more things that I am grateful for. Lately, I've also noticed in articles I've read and TED Talks I've watched that gratitude comes up again and again in discussions and research about what makes people happy. And, the more I think about it, the more I find things I am grateful for.

I am grateful for family whose love, advice, and support in everything I do in life is absolute and unwavering.

I am grateful for friends who provide a listening ear, a source of company and laughter, and are always looking out for me.

I am grateful for technology which allows me to stay healthy, live independently, and provides a source of endless fascination and enjoyment.

I am grateful for medications that keep me alive every day, that provide a safety net in emergencies, and that may someday lead to a cure.

I am grateful for my country which provides safe cities, abundant food, and clean drinking water ... things so many people can't take for granted.

I am grateful for my job which provides a source of income, new challenges and opportunities, and allows me the great privilege of helping others.

Most of all, I am grateful for being alive. Every day, I am aware that this is an immense gift. In the past 48 hours I have woken with a blood sugar of 2.6 mmol/L; I have crossed the street multiple times; I have had an afternoon of repeated asthma attacks; I have watched the evening news; I have been served hashbrowns at a restaurant (even after witnessing the server scribble a note about my anaphylactic allergy). I am continually aware that this gift could be taken away from me at any instant, without notice ... and therefore I am grateful, every day.

Happy Thanksgiving to those living in Canada. I hope it has been a wonderful long weekend filled with family, friends, and gratitude. And I hope everyone can continue to find things to be grateful for every day for the rest of the year.

Tuesday, October 8, 2013

It wasn't long after my diagnosis
with Type 1 diabetes that I was introduced to the five stages of grief.

Shortly after my release from
hospital, I was given a book called Children Have Diabetes Too by my paediatrician. I remember
reading the book with my mom, in particular the bright illustrations and my
annoyance that the doctors in the story were portrayed as bears—a feature which
I thought was stupid and detracted from the otherwise great book.

The book went into a surprising
amount of detail about the autoimmune process underlying Type 1 (especially for
a book copyright 1984), factors involved in daily management, and
complications. My parents did not shield me from the chapter on complications.
Throughout my childhood I had known that I had been very sick and almost died
as a baby, and that I had to let my parents know immediately if there were any
changes in my limited vision or I could go blind. My parents were not into
trying to hide me from harsh reality. As a nine-year-old, however, I could not
understand why there was a picture of an orange in the chapter about
complications. It was only when I saw the book years later, flipping through
the pages after dredging it up from a long-forgotten box of childhood memories, that I
realized it was a photograph of the back of the eye showing diabetic
retinopathy. The book was blunt about lows, too—depicting the main character
skipping an afternoon snack, playing hockey, and then passing out. The unfortunate
truth was that back in the late '80s and early '90s such reactions were not
nearly as uncommon as they are today.

One concept introduced in the book
which stuck in my mind was the five stages of grief. I don't think they were
called that, and I did not come across the name Kübler-Ross until my
introductory psychology course in university. But the stages of denial,
depression, anger, bargaining, and acceptance were covered thoroughly in the
pages of that book, colourful illustrations and all. The book even pointed out
that not everyone experiences all five stages, or experiences them in the same
order.

When I was first diagnosed I didn't
really understand what diabetes was myself. I did not fully grasp the fact that
I would have to take injections for the rest of my life, at least not until the
trip out of the hospital, my mom carrying an enormous bag of insulin vials,
test strips, meters, syringes, alcohol swabs, and logbooks. I stopped dead in
my tracks on the landing of the stairwell in the middle of the hospital lobby
and burst into tears, tears that perplexed me at the time.

A few nights later, after my
evening blood test and snack, I lay in bed as my mom tucked me in. Suddenly I
looked up at her and asked if I was going to die. "Of course not,"
she said. "Why would you think that?"

"Because it's called
die-abetes," I replied, sniffling.

The only stage I clearly remember
going through immediately after diagnosis was anger. Grade four was a rough
year for me, and although I blamed it on other things—I hated math, I hated
braille—my diagnosis with Type 1 diabetes within the first six weeks of the school year
likely played a big role. I remember feeling mad at the
the entire world. In one of my angriest, most rage-inspired moments I took my outstretched arm and swept it along the length of the bookshelf that ran along the wall above my bed,
emptying the entire contents onto the floor. Not quite satisfied, I grabbed the pillows off my bed and hurled them with all my might at my closed
bedroom door. Then, I lay on the pillowless bed and cried. I think my anger was as
much out of fearing the unknown as it was anger at the disease itself. And eventually, my anger dissipated.

Not long after my diagnosis my mom
answered the phone one morning, exchanged some hurried words with my dad, and
rushed out the door. When I arrived home from school that afternoon, she told
me that a girl a few years older than me, who I knew and who had been diagnosed
with Type 1 the previous year, hadn't woken up that morning. Her mom had called
my mom in a near-hysterical panic, and my mom had arrived at their house the
same time as the ambulance. "Don't worry, Mom," I reassured her after
hearing the story. "That will never happen to me."

"I hope not," she said,
"but that's why you need to be careful. Always be careful."

Within the first year of my
diagnosis we had encountered most of the curve-balls diabetes can throw. We had
gotten through flu season, birthday parties, exercise, restaurants, high blood
sugars, ketones, and severe lows. I had become used to the routine of blood
tests and injections, and was able to test without supervision, although my
parents still helped with all my insulin doses. I was a model diabetic,
following my medication and diet regimen with no hint of complaining. This pattern
continued well into my teenage years.

One thing the book I'd read after
diagnosis failed to mention was that, for kids, the stages of grief could be
delayed for years. After finishing the book I had been left with the mistaken
impression that after the first year, everything was fine. I have a theory
that, for kids, the stages are often delayed until the teenage years.

For me, the teenage years brought
the first stage: denial.

My main diabetes-related memories
during my teenage years are of lows. Frequent and often severe, I was
completely hypoglycemic unaware, and often had no idea that my blood sugar was
dropping. Lows struck most often in the early morning, late afternoon, or after
exercise, corresponding largely to the peaks of NPH.

I was not a bad diabetic as a
teenager. I continued to follow my diet and take my injections … mostly. One of
my only acts of true rebellion came when I was about 14 and rang in a blood
sugar of 19.5 mmol/L one Saturday before lunch. My mom launched into a lecture
about how I had to start taking responsibility for my diabetes, and my response
was to tell her that I would—I would simply never eat again. An hour later I
was sitting on my bed when I was suddenly overcome by a wave of dizziness and
strange sounds coming at me from all directions. I woke up a few minutes later
lying on my bed, completely confused. I managed to make my way down the stairs
where I announced that I thought I’d just fainted, and a blood test confirmed that I was low.

Yet, although that was my one and
only attempt at skipping a meal, I passively resisted taking responsibility for
my diabetes. My mom implored me to carry a fanny pack while I was at school,
but I refused because they were ugly—and besides, I’d be able to get food from
my locker if I was low.

It was only when harsh reality
stepped in that I finally changed my thinking.

On one particular day in gym I
began to feel low. I figured that the period was almost over, and that lunch block
was next, and I could just get something to eat then. Near the end of the
period I began to realize that something was seriously wrong. I asked if I
could go to the bathroom and, when permission was granted, ran from the gym. In
the bathroom stall, laying my forehead against the cool door, I could not
remember why I had asked to leave. I returned to class, and my memories from
there are a hazy blur filled in by others. After the gym period I somehow made
my way upstairs to the locker that I shared with a friend. I still knew
something was wrong, but not what, and asked my friend several times if she
could find my brother. She asked if I was low, and I replied that I wasn’t—and
proceeded to collapse. I vaguely remember lying on the floor staring up at the fluorescent
hallway lights. My friend somehow managed to make me sit up and eat, despite my hysterical laughter and demands to know what the Oreos she thrust into my hand were.
That incident shook both of us up, and for the next several days she kept a
protective eye on me. My diary entry of
April 30, 1998 documents my change in thinking, and also my shaken realization
that things could have been much worse:

So it ended up fine, because of [my
friend], and I’m so grateful that she knew what to do and actually did
something. I’m going to carry a [fanny pack] now with candy and food in it. What
really freaks me out is what if [my friend] hadn’t been there?

I had experienced severe lows before, but only in the safety of my own home, where my mom or one of my brothers would notice that something was wrong. Suddenly, I realized that lows could strike anywhere, even outside the safety net of people who knew what to do. That incident scared me into taking
some responsibility for my diabetes, but I still kept one foot in denial. My
parents received several phone calls (on my new, then-still-rare cell phone)
from restaurants, where I sat with a group of friends and a steaming plate of
food in front of me, declaring that I had forgotten my insulin. After several
trips downtownto deliver the
medication, my parents refused to do it any more. Lows continued to plague me. Ten months after my severe low at school, on Christmas morning of 1998, my promise to my mom that I
would always wake up for her was broken. A year after that, I switched to an
adult endocrinologist who moved my NPH injection to bedtime—which meant I had
to take three shots a day, but greatly reduced the number of severe lows I
experienced.

During my last year of high school
and into my 20s, I was so scared of lows that I preferred to let my numbers run
high. It wasn’t that I was bad—I still took my injections, although I sometimes
failed to follow my diet—it’s just that I wasn’t aggressive at all. I continued
for about five years with an A1c in the 8% and 9% range, oblivious to whatever
long-term damage I might be doing to my body.

And then, in my early 20s, the
second and third stages finally hit: depression and anger.

I’m not sure what prompted it, but
it was during my early 20s that I read my first diabetes autobiography, Needles: A Memoir of Growing Up with Diabetes. That was followed by half a dozen others.
And one thing I noticed about all of them was that the memoirs always ended in
complications.

Suddenly, the full force of
diabetes and its implications seemed to hit me all at once. I went through an
intense period of both anger and depression. Why me? Diabetes sucks! How can I
possibly keep this up forever? I hate this. What will life be like when I’m
old? If I live that long … I had a private blog on LiveJournal at the time, and
I spent months simultaneously railing at diabetes and feeling sorry for myself.

It was at this point that a friend
commented on one of my posts, suggesting that I type “diabetes” into the
community search box. Which I did. And thus represents my discovery of the Diabetes Online Community (DOC). A place where I could discuss the latest regimens and the experiences
of blood sugar swings, the ups and downs and hopes for a cure and fears of
complications, things that no non-diabetic understood. For the first time in my
life, even though I had known kids with Type 1 growing up, I felt like I could
talk to people. I felt like I wasn’t alone.

And hence began the fourth stage:
bargaining.

I knew rationally that diabetes would
never go away, of course, at least not without a cure. But when I discovered
the DOC my efforts to control my blood sugar redoubled. I learned to count carbohydrates and moved from NPH to
Lantus months after talking to people who were using multiple daily injections rather than a fixed insulin regimen. It was my first time
actually asking my endocrinologist if I could change medications. Two years
later, thanks in large part to nudges from some online friends who would, in
time, become “real life" friends, I asked to switch to the insulin pump. Through this effort I managed to lower my A1c enough that it brushed the upper 6% range. I was aiming to get below 6.5%.

Something else the book failed to
mention was that, for adults, the stages of grief may never end. They may continue revolving, popping up now and then before passing through to another.

And so it was that, about seven years after beginning to pour all my energy into diabetes, I hit the wall. I burned out. I felt defeated. I had tried the hardest I could possibly try and had failed. I felt like there was no point in even trying anymore. For about six months I stopped trying. I ate without counting carbohydrates. I forgot boluses and didn't think twice about it. It took three months for my A1c to jump from 7.1% to 8.5%.

After six months, I snapped out of it. Unfortunately, it's been two years and I still have not recovered the same control that I had before that period. I've vowed that I will never let it happen again, but I look ahead to my life—50 years, if I live into my 80s—and I'm sure there will come another period, at some point, where I hit a wall and burn out.

Sometimes, I feel like the stages of grief rotate on a daily cycle, sometimes even in the same day. The denial that can set in when there's a day of good numbers, feeling as if just maybe you can slack off a tiny bit. The bargaining on a day of riding the rollercoaster, hoping that if you behave maybe things will sort themselves out. The defeat and depression after a day of highs; maybe there's no point in bothering. The frustration, perhaps even anger, that wells up when you have done everything right and a high reading still glares back from your meter screen.

It was over two decades ago that I first encountered the stages of grief in a book about Type 1 diabetes written for newly-diagnosed children and their families. Through this montage of memories and reflections, there's been no mention of acceptance. I found myself wondering if maybe acceptance never came. Maybe that's what made chronic illness different from things like death. Maybe, I would never get to that stage.

I was diagnosed with Type 1 diabetes 22 years ago today. It was even a Tuesday, like today: October 8, 1991. It seems a lifetime ago. But recently, in the past year, I have seen glimmers of changes. I have stepped back, and tried to take diabetes one test at a time. I have rebalanced other areas of my life, and that in turn has rebalanced some of my emotions around diabetes. I've tried to temper emotional reactions to readings—but I've also let myself realize that sometimes, emotions are okay. And, although I can't yet identify anything positive having diabetes has given me, I'm able to imagine that one day, I'll find something. Perhaps, in a way, this is acceptance, or at least the first glimmers of its arrival. Maybe it does exist, after all, and I imagine I'll get there eventually.

Saturday, September 7, 2013

I was introduced to the white cane at the age of about eight. I was given one mostly for identification when crossing streets. I don't remember being taught any cane techniques, except how to properly hold the cane for street crossings and detecting curbs, but I was provided with a mobility cane rather than an identification cane. Some of my most vivid memories of O&M lessons involve standing at street corners, listening to traffic flow, being reminded to "open the gate" and reposition my cane when I was ready to step out and cross. Throughout elementary and high school I mostly used my cane to cross the street, and kept it in my backpack (if I brought it along at all) the rest of the time.

I have a good deal of travel vision. About 99% of the time, I can see a flight of stairs coming. It depends on the weather and lighting, of course, but most of the time I know that a flight is coming up, even if I can't see it until I'm nearly on top of it. I can see when to slow down, where the railing is, and whether the steps are ascending or descending. I may use my cane to check depth or confirm where the flight begins or ends, but I can see enough that the cane is simply for confirmation. I can also usually see cars when they get close—at least their type (car, truck, van) and colour, if not their details or the driver inside. Depending on the lighting, I may be able to see the colour of the traffic light, although typically I can't see this unless it's overcast or dusk. Mostly, I rely on traffic flow to determine when to cross a street, something I was taught from the time I was young. But I look both ways before I cross, just like everyone else. I just make sure to listen, too.

Sometimes, maybe often, I forget how little I see. I can walk around without a cane in familiar territory, even outdoor territory, and no one would have any idea that I was legally blind. Friends often forget, too. Or they are perplexed about what I can and can't see—which is understandable, given that what I see can change dramatically based on the environment. If the weather is overcast I may be able to see quite well (relatively speaking). But if it's raining, turning sidewalks and roads into a reflective surface and source of glare, my ability to distinguish objects around me decreases dramatically. During daylight my vision may be adequate to walk down a sidewalk with minimal reliance on my cane, but come sundown my vision is virtually gone and I switch to relying completely on competent use of cane techniques. Even the direction I'm walking can make a difference: with my back to the sun I can clearly see objects, but turn around and walk the other way and the glare from the sun obliterates everything. It's no wonder anyone watching me might get confused!

When I first began using a cane regularly in my late teens, I got some
interesting reactions from peers who had previously seen me walking and
even running around the high school without one. Did I really need to use that? I was walking with them. I was in familiar territory with no steps. They were probably just as self-conscious walking with someone using a white cane as I was using a white cane myself.

What they didn't see was me stopping dead in my tracks after sundown, calling to the friends I'd been walking with, who had suddenly vanished into the blackness along with the path and objects around us. What they didn't see was me trying to travel with sun shining in my face or glaring off glass windows downtown, where it obliterated everything in front of me with its brightness. What they didn't see was me travelling once I was out of familiar territory, where I hesitated at every curb and crack in the sidewalk to check, and where I jarred my teeth when I stepped down off unexpected drop-offs.

My first experience of wishing I had my cane and finding I didn't came in about grade ten. Our gym class used to run around a trail in the woods across the street from the high school. I had a note saying that I couldn't run, on account of the fact that I couldn't see rocks and tree roots at all due to the effects of speckled light filtering through trees. So, I was paired with a classmate and we were allowed to walk (although I'm not sure my teacher ever really believed that I couldn't run). On this particular occasion I somehow took a wrong turn and got separated from my partner and from the entire group. I tried to find them, but soon realized the class period was coming to an end and they had probably gone back to the school. This was all familiar territory to me, but as I stood on the edge of the busy road, trying to determine when to cross, I found myself wishing for my cane for the first time in my life. I made it across the street safely, but felt unsafe doing so.

Over the years since high school, I have become a full-time cane user. College and university brought with it solo travel in unfamiliar territory, night travel, and a growing awareness that no one else was looking out for me except myself. Even though I have residual vision, and use it frequently during my travels, these days I feel uncertain and cautious when I'm not using my cane. On the very rare occasions I do leave home without it, I find myself slowing down, staring at the ground ahead of me, not trusting what I see. Is that a crack in the sidewalk or a step? As a kid, I often used to slide my foot forward to check. As an adult, I feel far too conspicuous doing that, so I probe with the tip of my cane instead.

When I first began using a white cane, the fact that I had residual vision was a huge hurdle for me. I was terrified as a teenager that someone would accuse me of faking. It has not happened in nearly fifteen years of being a full-time cane user, but most people I encounter do assume I have no vision. They offer me their arm, or give me detailed directions about how many metres in front of me the bus stop is. I don't mind this type of assistance, but as a teenager I used to feel guilty that I could see, when everyone who saw me thought I was totally blind. In truth, anyone who is legally blind has a perfect right to use a white cane, but it's a decision that many people with low vision struggle with ... and some never get past that struggle.

I have, in fact, been questioned several times over the years about why I use a cane. Friends and acquaintances have sometimes seen me step up onto a curb without touching it with the cane first, or see me walking around some places with it folded up, and asked why I need it. Over the years, those close to me have come to see the value of the cane, both in my safety and independence, and no longer question me. But occasionally, I am still questioned, more out of curiosity than criticism. Recently, an O&M instructor (not one I was working with) commented that I didn't really need a cane—although she was surprised and quickly backtracked on the statement when I told her what my visual acuity was. When questions like these arise, especially from professionals, that old twinge of self-consciousness comes creeping back. Maybe I don't really need a cane. Maybe I'm just not using my vision well enough. Maybe I just need to learn to trust myself more. I can, after all, see 99% of the things around me when I'm travelling in good lighting. I've learned from talking with others that this feeling of uncertainty and self-consciousness seems to be an almost universal experience among cane users with residual vision, at least in the beginning. (Not just with using a white cane, but with any tool associated with blindness, such as braille or a screen reader.) Even after so long, I still find my mind tangled up in this line of thinking on occasion. I certainly need a cane in some situations like at night or in poor weather, but maybe I don't really need one all the time.

But then, every once in a while, I encounter the 1% of things I can't see, even in good lighting. My cane suddenly clangs off a signpost I completely missed, or drops off the edge of a curb I had no idea was coming, or snags in a tree branch across the path that I didn't know I should keep an eye out for. And it's these moments that I feel completely emotionally vindicated.

The other day I was walking downtown with a friend. It wasn't an unfamiliar area, but it wasn't an area I had memorized, either. It was slightly overcast, virtually the perfect lighting conditions for my vision. And suddenly, as we walked, I felt my cane unexpectedly drop off the edge of a step. I hadn't slowed down at all, so my forward momentum nearly pitched me down the short flight of stairs. I was so startled I actually cried out; I am so used to seeing obstacles and changes in elevation before my cane reaches them that the sensation of my cane detecting something unseen came as a complete surprise.

Then I composed myself and walked down the four or five stairs that I'd been clueless about a second earlier. As I did, I turned to my friend. "I didn't see these stairs at all," I said in explanation of my reaction. "And that's why I use a cane all the time—for the 1% of stairs I don't see."

Maybe I could get along relatively fine in most areas even if I didn't use a cane, albeit seeming a bit uncertain and clumsy to anyone watching. But I'd also probably have a lot more bruises, a few more broken bones, and possibly worse injuries for not taking advantage of such a tool.

Monday, August 26, 2013

Several months ago I had a salad, some fruit, and cheese for lunch. That morning I had been too busy to pack my usual lunch, so picked up some food on the way to work. I had been running high all morning and set an increased basal rate on my pump. Despite this, I remained high. At lunch, as I sat talking with colleagues, I bolused for the food. I didn't even think that I was eating something different than usual. I plugged in my lunch of 40 grams of carbohydrates and continued eating and chatting.

An hour after lunch I was wrapping up a conference call with a client when I began feeling a bit low. I tested at 2.9 mmol/L and thought that was a little odd, so cancelled the temporary basal rate on my pump and ate a few glucose tablets.

Fifteen minutes later I felt no better; maybe even a little worse. I tested again and found myself at 3.1 mmol/L. I ate some more glucose tablets and took a few minutes out from work. I rarely get shaky with lows, but I felt shaky with this one, like my body was fighting with all its might to bring my blood sugar up.

Fifteen minutes later I'm still feeling low. I check again and find I'm at 3.3 mmol/L. By this point I knew something wasn't right. I check my pump and see that I have over four units of insulin on board. It was at this point that I realized I had bolused for 40 grams when I had eaten only 15 grams.

I felt no real panic at the time, although I did debate telling an office mate that I was having a bad low, which I don't typically do. I ate the remainder of the glucose tablets and brought out my backup supply. I suspended my pump's insulin delivery. I went to the fridge and brought out a small tub of fruit and ate the entire thing.

I left my pump off for two hours. I was sure I was overdoing it. But two hours later I was 4.7 mmol/L. And three hours after that, a full five hours after eating an entire tube of glucose tablets, a half a tub of fruit, and going without insulin for two hours, I was 7.0 mmol/L.

That evening, as I lay in bed drifting towards sleep, I had the stark realization that I had almost died that day. Not literally, of course. But it was the kind of low that was not a disaster because I had supplies, and backup supplies. And because I tested often and knew what to do. It's the kind of low that easily could have turned out frighteningly differently.

Flash forward a few months.

The night before last I woke up in the middle of the night with a blood sugar of 2.8 mmol/L. I ate several glucose tablets, a granola bar, and a glass of almond milk. I didn't bolus for any of it, and I woke up in the morning at 5.5 mmol/L. It should have been a warning, but I made no changes to my pump basal rates. I did, however, set my alarm for 2:00 AM last night so that I could wake up and check, just in case.

At 2:00 last night, I have no memory of the alarm going off. I do have a vague memory of removing the wrist brace I've started wearing at night for carpel tunnel syndrome. Perhaps at this point I got up and turned the alarm off. At any rate, there is no record in my glucose meter that I tested.

At 4:00 AM, I woke up with my right hand tingling like crazy. I climbed out of bed and retrieved the wrist brace from the spot across the room where it had landed when I flung it away. Since I was up, I decided to test. I was 3.4 mmol/L and ate a glucose tablet. After thinking a moment, I ate another one as well. Just in case.

Coughing woke me up in the morning. I tossed and turned for a while before reluctantly climbing out of bed. Then I looked at the time.

8:58 AM.

I'm supposed to be at work at 8:30 AM. My alarm usually goes off at 6:00 AM.

The first thing I did was grab the phone to call my colleague and let her know there was no way I would be there in time for my 9:00 appointment. It was all I could think about. I dialled and pressed the phone to my ear, hearing no dial tone. I hung up and tried again, and for a few moments couldn't even figure out if the phone was on or off. Finally, I managed to punch in the right digits and got through. My colleague was available and had no appointments, so said she would cover me for the appointment.

It wasn't until I hung up that I thought to test.

2.0 mmol/L.

I was surprised when I saw the reading. I didn't feel low at all. As I scrambled to get ready for work, I crunched through four glucose tablets. As I was heading out the door, I popped one more in my mouth. I called a cab to take me to the nearest train station, since I didn't know how long I'd have to wait for a bus.

It wasn't until my mind cleared that I realized how foggy it had been when I first woke up.

When I got to the station, half an hour after my initial test, I still felt odd and shaky. I tested at 4.3 mmol/L and, even though I wasn't truly low, ate another glucose tablet. I found myself wondering if I had any stash of low supplies in my office, in case I burned through the tube of tablets I had with me.

It was when I was riding the train, sitting quietly staring out the window, that I began to really process what had happened. Before leaving I had checked my alarm. Both alarms had been set correctly and turned on.

Was I really low all night? Was that why I didn't wake up for two alarms?

And then the thought crept into my mind, the thought that has haunted every adult with Type 1 diabetes who lives alone, and every parent of a child with Type 1 diabetes.What if I hadn't woken up at all this morning?
I arrived at my office still feeling off. It was now an hour after initially waking up. The first thing I did after walking into my office was test. 3.8 mmol/L. My colleague came in to say hello and ask how I was. I ignored her momentarily, instead popping another two glucose tablets and pulling out my pump. I lowered all my basal rates across the board.

I thought about my childhood, dream-like memories of mornings waking up with my entire body tingling to find my mom pressing the straw of a juice box between my lips, telling me that I was low and had to drink some juice. And—worse—a few memories missing completely, filled in only by my parents' retelling of events. Battles with glucose tablets and juice boxes, me resisting and screaming, or laughing, or spitting out the glucose gel that was squeezed into my cheek. The shape of someone standing in the doorway holding a phone, asking if they should call 911.

For the most part, I forget. Most of the time, I think it's a bit dramatic to call Type 1 diabetes a life-threatening disease. People live with this disease for years. Most of the time, we deal with it and move on with life living, working, and participating in any and all activities we choose.

Then there are times like today, when I sit at work, barely hearing the meeting proceedings. Thinking back to this morning. What if I hadn't taken off the wrist brace, and my hand hadn't tingled and woken me up, and I hadn't eaten some glucose tablets? What if allergies hadn't woken me up this morning? What if I hadn't woken up at all?

What if, what if ...

On some occasions, I feel threatened. I feel like I flirted with death, getting too close to the line for comfort, and still make it in the end by pure luck. These are the scary lows, the dangerous highs, the close calls exchanged among the diabetes community. These are the forum posts made at 2:30 AM as someone, somewhere, is up treating a dangerously out of range blood sugar while the world around them sleeps. This is the fear of a mother who still worries about her adult Type 1 daughter if she doesn't hear from her at least once a day. This is the realization that of the dozens of diabetes-related decisions we make daily, it takes only one wrong decision for things to get perilous.

Sometimes, I feel like life-threatening is a completely appropriate label for this disease.

Friday, August 16, 2013

I lie back, closing my eyes. It feels awkward at first, but I soon get used to the rhythmic movement of my hands. The words come slowly—I have not been doing this long—but they come silently, each building upon the other until the images forming in my head, a movie reel of the story unfolding before me, becomes so real it feels almost like a dream. Around me, there is silence. No voice chattering in my ear or whirr of a cassette tape player. Not even the rhythmic squeak of my video magnifier's tray.

At age 18, for the first time in my life, I am reading in bed.

I had read before bed for years. But for me, reading before bed had never meant reading in bed. Even with large print, it was impossible for me to read comfortably while lying down. I needed bright light at close range, needed to wear uncomfortably heavy magnifying glasses, and needed to hold the print so close that I either blocked the light with my head or my arms got tired holding the book. I had tried many times before, and each ended with me sighing, turning off the bedside light, and stumbling over to the desk where my video magnifier sat. There, I would often read for hours, the only sound after everyone had gone to sleep being the squeak of the reading tray as I scanned words underneath the camera. As a teenager I would read well past midnight, until my eyes got so bleary I could no longer focus on the words. But I'd never been able to read in bed, words filtering through a half-conscious mind as sleep crept in. Reading in bed had always meant listening to an audio book, which wasn't the same.

Contrary to what many people assume when they see me reading braille, I did not grow up reading the code. I grew up reading print. Although I learned a fair chunk of the braille code as a child, I was never truly a braille reader. Braille was an adjunct skill, a backup in case I ever needed it in future. Although I learned the basics of reading and writing, I never made it through the entire code. It wasn't a tool I ever used in the classroom, and in fact I hated the extra work of it, having to sit at home in the evenings reading a few pages of braille when I wasn't using it for any practical purpose. To this day, I am thankful for learning those basics: the muscle memory of two-handed reading and using a braille keyboard made it possible to pick up the skill again without any formal instruction as an adult. But I am regretful that my teachers didn't encourage me to use the skill in the classroom, because doing so may have made me see the value of it well before my young adult years.

I didn't even become a "reader" at all until I was in grade four. Before that, I couldn't read much. My primary teachers in the 1980s used a "whole language" approach where students were sort of expected to pick up reading on their own, just by being surrounded by and exposed to books and stories. This didn't work so well for me, not being able to see a majority of the print plastered on classroom walls nor the books available in the classroom or school library. By grade three, when I was a full two grade levels below expectations in reading, terms like "learning disability" were beginning to be tossed around.

That summer, my mom decided that enough was enough and that (since I didn't enjoy doing it on my own) I would be made to read. She hired a girl a few years older than me to sit with me in front of my black-and-white video magnifier as I read aloud for half an hour each day. She told the girl to just tell me any words I didn't know. She let me pick the book (Karen's Witch by Ann M. Martin), and every day that summer I sat, tethered to my desk, reading for at least half an hour. Some days, as the summer neared an end, I chose to read for longer than the requisite 30 minutes. But, by the end of that summer I could read. In fact, when I received academic testing in grade four, the school staff were startled by the results which pegged my reading level a full two grade levels above expectations.

After that, I never looked back. I loved reading. I devoured books. I loved days with inclement weather when we were allowed to stay inside during lunch hour, where I could read, instead of having to go outside. Libraries were (and still are) one of my favourite places to be. When the after-lunch silent reading period came to an end in class I would often try to continue reading, hiding behind the bulk of the video magnifier. Sometimes it worked, and I managed to sneak in an extra five or ten minutes before the teacher realized I was missing. In high school, I had to give my parents books I bought for safe-keeping, telling them not to let me have them until I was done my homework. As they fell asleep in an adjacent room, my parents could often hear the squeak of my video magnifier tray long after my bedtime. On weekends, they sometimes had to ban me from reading just so that I would get out of my bedroom.

And that, my bedroom, highlighted the only downside to reading for me. I couldn't do it, at least not for long or with comfort, without a video magnifier. Nowadays there are portable units (although they are still not the best for extended reading), but back in the 1990s it meant that I was limited to one single location at home where I could read. At school, too, I was limited to the two video magnifiers stationed in various locations in the school. I envied people who could read on the bus. I especially envied my brothers during road and camping trips. I always brought a large print book with me, but even the print in those required me to wear my glasses and read, squinting, with my nose skimming the page and my head tilted at odd angles so as not to block the light. I often persisted despite the headache and muscle cramps that set in with time.

Near the end of high school I attended a summer camp for teenagers with visual impairments, which kindled my interest in braille. That year, I dug out my old Perkins brailler. which had sat in my closet untouched for nearly ten years, and re-learned the braille alphabet. In grade 12, I wrote a children's story about a blind girl attending regular school, and as part of that creative writing project (and, yes, partly to impress my teacher), I produced a braille copy of the story.

Around the same time, I asked the public librarian if they had any children's books in braille. I was shocked when she went to the back, shuffled items around, and returned a few minutes later with about four titles. I felt it was wrong, somehow, to have the braille books shut away like that. But I took Corduroy home and read it. I sat in an armchair in the living room as I puzzled through the long-forgotten symbols. It took me an hour to get through that short children's book, but as I read it I realized that I could read this anywhere. It didn't depend on light or technology or how much visual energy I had used up earlier that day with reading or drawing or playing video games. That day was the beginning of my love of braille.

I spent the rest of my grade 12 year re-teaching myself braille reading and writing. I studied it daily, in any spare moment I could find. It got to the point that my mom told me to quit with the braille and focus on my school grades. I was shy about it at first; I thought people would think it was a bit weird. For some reason, I was scared to mention my interest to my itinerant vision teacher, and therefore never brought it up with her. By the end of that school year, when I graduated in June of 2000, I was reading multi-volume braille titles from the CNIB Library. I still wasn't fast, but I quickly discovered reading in bed, and did so daily. During my second year of college I took the plunge and asked to use braille as my preferred reading medium for textbooks and course materials. I also got a Braille Lite on loan, which I credit with catapulting me into actually being a fluent braille reader. Braille was not easy. It took daily practice and, even with that, it was years before I considered myself fast. Before I began my student teaching program in 2006, I was panicked by the fact that I couldn't read aloud fluently without halting and stumbling. For several months, I practiced reading aloud daily, sometimes into thin air and sometimes into a tape recorder, which I forced myself to listen to. That's when I went from being a fluent silent reader to being able to read aloud with fluency and expression. I had a sense that braille would allow me to excel in the future, if I could become as proficient at it as possible.

I was right. Braille has allowed me to become certified to teach in several specializations which each involved practicums that I suspect would have been much, much harder (if not impossible) without using braille. It has allowed me to serve on boards, chair meetings, and make public presentations. It has allowed me to participate in extracurricular activities such as Toastmasters (and get compliments about my "eye contact" with the audience during my speeches). In some aspects of teaching, using braille is an advantage over using print.

The other day I played a game of concept-review Jeopardy with a group of kids. I had the categories and questions on my BrailleNote, formatted so that I could jump from category to category or question to question using the thumb keys on the device. I was able to navigate and read just as quickly as someone using print, and I was able to be much more highly engaged with the students than would have been possible hiding behind a laptop or piece of paper—something that has often been mentioned when other professionals have done formal observations for practicums or evaluations. Some tasks I have done, such as formal academic assessments that are highly scripted and timed, I think would be impossible to do while relying on audio or struggling to read magnified print.

It took a lot of effort and investment of time, but learning braille and putting in the effort to become proficient has definitely paid off. I'm still early in my career, and I'm sure it will continue to be an invaluable skill. These days I don't always use braille on a daily basis for my work, since my job does not involve classroom teaching, but I do make an effort to read before bed or while riding public transit when I can, so that I can remain fluent when the need arises. I am at the point where my braille reading speed has matched or surpassed my print reading speed.

Sometimes it truly amazes me how many blind individuals do not know braille, or how many have learned the alphabet but never develop any useful fluency. It is not an uncommon situation that I will find myself to be the most proficient (or only) braille reader in a room despite the fact that I have the most residual vision of the group. I have seen board meetings chaired by someone pausing to listen to a computer's speech synthesizer in their ear before talking. I have seen reports given via a digital player reading a pre-recorded DAISY file. I have had individuals on the phone take notes by repeating what I tell them into a voice recorder. And, while all of these strategies work, none of them are elegant or transparent. Recently an article circulated among the online blindness community about how to use a portable DAISY player as an audio teleprompter. While I appreciate the ingenuity—I love finding new, useful ways of using technology—and while I haven't yet listened to the presentation (although I intend to), I can't imagine how much effort it must take to listen and speak simultaneously. I myself take advantage of synthesized speech and recorded content on a regular basis; there are times when this is faster, or more convenient, or when I just feel like listening instead of reading. But I can't imagine having no real choice. I think back to the days where I was tethered to my desk to read, and I can't imagine going back to that.

There are nights like tonight, when I come home exhausted after a crazy-busy workweek, and just feel like doing something quiet. No computer, no incessant nattering of a voice in my ear. Momentarily, I will get my BrailleNote, sprawl out on the couch with a cup of tea, and find something good to read. And on those nights, and during those moments when doing something would be inefficient or impossible without it, I can't imagine my life without braille.

Monday, August 5, 2013

The shrill clangs pulled me out of a deep sleep. What the ...? My mind spluttered. I grabbed my cell phone and peered blearily at the numbers on the lock screen: 4:02 AM. In the next instant it dawned on me that the fire alarm was wailing. Not the tiny smoke detector in my apartment, but the full-fledged clanging of the building's alarm.

I sprang out of bed and bolted to my apartment door. The hallway was lit, reverberating even more loudly with the clang of the alarm, but deserted. For an instant, I wondered if this was a drill. Why wasn't everyone evacuating? But in the next moments I was grabbing a coat, fumbling to unplug my cell phone, reaching for my keys and cane, slipping on some sandals, and was out the door.

The hallway was still deserted. The stairwells were lit, and everything seemed normal. But as I descended the first flight I heard the banging of doors and echoes of footsteps, and I was soon joined by a stream of other residents evacuating the building. Trailing down the stairs in our pyjamas and robes, we emerged into the warm summer darkness to find a few dozen residents milling around the building entrance. In another few seconds the murmur of the gathered crowd was overtaken by the wail of sirens as several emergency vehicles pulled up.

Definitely not a drill.

The crowd parted to let the firefighters through. People craned their necks to look up at the high-rise, searching for any hint of flames. Some speculated that they thought they smelled smoke. Other comments were impossible to hear, vying with the alarms still wailing from within. I stood quietly to one side, taking everything in and thinking.

In the light spilling from the building entrance and the intermittent flash of siren lights washing over the mingled crowd, I noticed that some people were carrying backpacks or what looked like coolers. I thought of my earthquake kit up in my apartment, and allowed myself to consider the possibility that some sort of emergency had actually occurred. What if we weren't allowed back in the building tonight? All I had on my person was my cell phone, keys, cane, and the hundred or so units of insulin in my pump. No meter, no glucose tablets, no money or wallet. I was woefully unprepared to get through even one night on my own.

I live in a major earthquake zone, part of the so-called Ring of Fire. Periodically, we get articles in the paper about lack of emergency preparedness by the denizens of this metropolis. Yet I, and probably a majority of young adults who grew up in the area, have never lived through any kind of natural disaster. For us, transit shutdowns or local power outages are the extent of our experience, and they hardly quality as anything more than an inconvenience.

I have an earthquake kit which has remained untouched for several years, the supplies in it likely long expired. Ironically, I've always been a fan of post-apocalyptic stories and have always had an interest in earthquakes (I wanted to be a seismologist when I was in high school, until I changed my mind and went into teaching). Just this past weekend I watched Under the Dome online, and I'm currently halfway through reading One Second After. Incidentally, both stories involve characters with Type 1 diabetes. I've also recently begun co-chairing the Health and Safety committee at work. Perhaps due to this combination of stories and events on my mind, as I stood there huddled in the night with the others I wondered if I would be prepared to up and leave my building right then and there with only the items I carried. Not necessarily to survive the zombie apocalypse, but to survive a real-life emergency.

I've known friends whose lives have been turned upside down in an instant by house fire. I see natural disasters affecting metropolitan areas in the news on a regular basis. What if I'd been woken to my building swaying and the city shaken by a major earthquake? Was I prepared to survive for even a few nights on my own without warning?

The short answer to that question is no. I'm not prepared, at all.

In the end, it turned out that the fire alarm had been, while not quite a false alarm, triggered by a minor issue involving some piece of equipment in the building's innards. Those who thought they smelled smoke were not imagining things. But a half hour after we congregated on the sidewalk beside the building's entrance, a firefighter gave the all-clear for everyone to return to their apartments. I returned to my suite, had a glass of water, and climbed back into bed. I read for a long time before finally drifting off to sleep.

Today I dug my long-neglected earthquake kit out of my front closet. I realized immediately that it wasn't in a pack that I would ever grab in an instant as I headed out the door as I had last night. I unpacked it and found expired pump cartridges, written settings for a model of insulin pump I no longer used, batteries that looked like they were decaying, and glucose tablets that had expired years ago. I found a spare cane, a flashlight that still worked, bottles of water, and some cash. A few years ago my mom, after seeing earthquakes on the news, bought some supplies for my brothers and I, and so I also found a poncho, matches and a lighter, prepaid long distance phone card, and a whistle. Other things which I think would be useful or essential, such as a magnifier, spare meter, insulin (and allergy and asthma medication such as Reactine, Benadryl, an inhaler and an EpiPen), and any sort of food, were completely absent.

Definitely a good foundation for a kit, if it was replenished and updated and stored in a more suitable pack. Definitely not a bad thing to be reminded of every once in a while, either. I think my late-summer project will be updating the kit and making it into something I really can grab on a moment's notice.

Saturday, July 27, 2013

Part of living with diabetes and low vision is all the "gear" that needs to be carried around on a daily basis. I mean, most people can leave the house with their keys, wallet, and cell phone at a minimum and get through the day relatively fine. With diabetes, throw in a glucose meter kit, emergency carbohydrates, insulin pens or a pump, backup supplies (for pumps), and other miscellaneous gear such as a means of record-keeping. With low vision, throw in a monocular, magnifier, sunglasses, and a cane. With allergies, throw in Benadryl and other antihistamines, tissues, an inhaler, and an EpiPen.

And then throw in any of the other necessary extra stuff, such as an iPad or e-book reader—if you have room. Not to mention lunch!

This afternoon I went shopping for a DSLR bag, in hopes that I will bring my camera more places, and it has involved a fair amount of watching YouTube, reading reviews, and making comparisons. I settled on a bag that is larger than what I need for my camera gear, but has the room I need for all that "extra" stuff (and room to grow should I purchase another lens or two). Tonight, I began thinking about revamping my enormous swim bag into something more manageable, and did a quick Amazon search for some ideas. I am always after the most compact means of carrying my stuff, and with all this thinking about bags I also began thinking about how I could easily transfer my essentials from my everyday bag to my camera or swimming bag.

One of my biggest challenges is deciding what is reasonable to carry with me on particular outings and what is overkill. Do I really need to bring my EpiPen when I'm just going swimming at the local pool or going for a walk through the park? On one hand, I don't plan on eating anything other than what I brought. On the other hand, allergic reactions are never planned. I'm allergic to more than just food, things like pollens (trees, grass, weeds), animals (cats and dogs and feathers), dust and dust mites, mould, tobacco smoke, and mosquitoes, most of which are impossible to completely avoid. I get hives from petting cats and dogs and from touching potatoes, and have had situations where I've had to leave an environment because just breathing in steam from potatoes makes me feel allergic. Is the convenience of saving a small amount of space worth the small risk that I may have a life-threatening allergic reaction during an activity as sheltered as swimming? What if some random kid sitting next to me on the bus spills his bag of potato chips in my lap?

An EpiPen takes up a small amount of space. But when you repeat this for a dozen different pieces of "essential" gear, that space can add up quickly.

I went through a period where I had whittled my "essentials" down so much that the only backup pump supplies I carried on a daily basis was a filled insulin pen and a few needles. Everyone with diabetes knows that low blood sugar can come out of nowhere, and glucose tablets (and backup glucose tablets) are one thing I am never without. But, like an EpiPen, backup pump supplies aren't needed on anywhere near a daily basis, and can take up a lot of space. This worked for a while—until I actually found myself at work one day with a failed infusion site and rapidly climbing blood sugar. At the time I covered with injections, but after repeating that routine several times at work and other locations I've begun to carry a spare infusion set and cartridge with me at all times.

In terms of my low vision gear, I typically pack a monocular, a Compact Mini (a small video magnifier), sunglasses, and of course my cane, although that's mostly in my hand and not in my bag. Still, this is delicate equipment, and my bags in the past have been stuffed so full that LCD screens have been cracked (thankfully on a point-and-shoot camera, not my video magnifier) and sunglasses have been crushed. I've tried leaving some items, such as the monocular, at home ... but without fail, Murphy's Law means that on those occasions I invariably end up on and unfamiliar street corner with sparse pedestrian or vehicular traffic, a situation where a monocular is invaluable for me. And so, I end up counting all these items as essential.

I do make some compromises on what I carry. I only carry one EpiPen with me, even though most sources recommend carrying two. I don't carry a glucagon kit around on a daily basis, even though there is a chance I may someday need it. I don't carry some things, like my reading glasses, on a daily basis even though I occasionally find myself wishing I had them. I carry about as much medical gear to survive for roughly two days—assuming nothing in the bag is lost or damaged—and just hope I never encounter a disaster that calls on me to survive for longer. I live in an earthquake zone, and on occasion I'll see articles or PSAs about how everyone should have a kit that would enable them to survive for 72 hours unassisted in their homes and cars. That's a tall order for someone who uses public transit, but after seeing numerous natural disasters occur in populated areas over the past few years, I've decided that it's not so far-fetched that I could get stranded across the city for a night or two.

Often, especially on days when I have to bring a lunch or something like my iPad or BrailleNote with me, I end up carrying two bags. Sometimes, I feel like a pack mule, especially if I also stop at the grocery store on the way home and end up with a few bags of produce in addition to my original load. I have tried backpacks, but don't favour them because they can get awkward on crowded public transit, and I invariably end up whacking someone in the face when attempting to sit, stand, or turn. My current project is to find a way of packing lunch that makes it small enough to fit inside my bag, so that I have that one less thing to carry on my daily commute.

Evidently, I do a fairly good job of packing large amounts of gear into relatively small bags. Every time someone picks up my bag they go, "Wow, what do you have in here?!" I'm sure they don't really want to know--that would involve going into my entire medical history--but I assure them that, no, I really can't go without anything in the bag. Now, to solve the issue of quickly transferring essentials from one pack to another without forgetting something ...

Tuesday, July 16, 2013

The other day, on my commute home from work, I stood on the train as it sped down its elevated tracks, trying to avoid toppling over and simultaneously protect the camera around my neck. A man standing next to me asked if I wanted a seat, which I declined. We stood in silence for a few moments, and I sensed from his body language that he was staring at me out of the corner of his eye, his gaze shifting between the white cane I held in one hand to the bulky DSLR camera slung around my neck. I imagined his mind whirring, wanting to say something but not knowing how. The next time the train lurched on its way out of a station I grabbed a handrail for support. He asked if I was sure I didn't want a seat, and partly intentionally I said, "No, thanks. I'm just off balance from carrying these two bags plus the camera."

"Ah," he said. Then a moment of silence. "How, uh ... how do you take pictures?" There! Ice successfully broken.

I smiled and told him that I use autofocus a lot, and also had the camera's buttons and menus memorized. (A half truth, since I haven't yet had as much time to dedicate to learning photography and to use this camera as I would like.)

"Wow," he said softly. "That's amazing."

I (and the things I do) get called "amazing" with some regularity; and anyone who knows me well can tell you that I hate having the term applied to me. Not due to any issue of personal offence, but rather to an issue of societal attitude. Inspirational, sure. I can grin and bear it. We all find inspiration in different things, whether it be a mountain or a baby or a poem. But amazing is different. Amazing implies something startlingly impressive and rarely achieved.

None of the things I'm called amazing for are, in fact, actually amazing. Some of them are impressive, a show of dedication or skill, but all are everyday things that hundreds, thousands, even millions of people are expected to do without much fanfare, if any. I can't imagine someone being told they are amazing for reading ... or for commuting from home to work ... (or even having a job to go to in the first place!) ... or for completing a routine university degree. Even photography—although perhaps not the most common or well-known hobby—has an active community of blind photographers, and I know many individuals who are legally blind and own DSLR cameras.

I've been called amazing for all of these things and more. Whenever I get comments about being amazing and I reply that I'm actually not, people think I'm being meek and humble, although that's not the case. The truth is that I really don't think any of the things I do are amazing, and I wish society didn't treat them as if they were.

Why? Because it lowers expectations.

The next step up from "amazing" is nigh impossible. Doing something at the pinnacle of human achievement, whether athletic, intellectual, or artistic, is amazing. Only extraordinary people do amazing things. Doing an everyday task that most non-disabled people do routinely should not be considered an amazing feat.

The biggest tragedy of being born blind is not blindness itself, nor
even being born into a world that is largely inaccessible. The biggest
tragedy of blindness is that society's expectations are immediately
lowered so much. If not by parents, then by teachers, or employers, or
just the societal milieu in general. This shouldn't be the case. And
calling someone "amazing" for doing a rather mundane task does nothing
except reinforce these lower expectations.

If someone is consistently being told they are doing well—even if they may, in fact, be performing well below average—they will be apt to stop trying, stop pushing themselves to achieve a higher goal. If reading braille even slowly, doing the most basic of tasks on the computer with screen reading software, or crossing an intersection using a white cane are amazing tasks, then what of completing a doctorate degree, becoming a software engineer, or travelling the world?

The attitude that everyday tasks, done without vision, are amazing is harmful to everyone involved. It's harmful to parents of children who are born blind, who may become overprotective and fearful of their child's future. It's harmful for children themselves, who are just beginning to understand the cultural stereotypes that surround blindness. It's harmful for young adults, who find themselves wondering if it's possible for them to become a tradesperson or keep up with a university courseload. It's harmful to the blind adult who, eventually, may come to doubt even their own abilities, creating a self-fulfilling prophecy.

It's harmful to people who are sighted, too. It's harmful to employers, who may pass over an applicant with a visual impairment because they wonder how they will get to and from work (never mind do the job they are applying for). In the same way, it's harmful to anyone who interacts with individuals who are blind (or have any disability) in the community, who may wonder how they can safely participate in a program. And, most of all, it's harmful to adults who are themselves facing blindness, and with it are facing what is for many the most scary experience of their life. If reading braille, and navigating a city, and living independently are so amazing, how will they ever believe that they can achieve these things. To say nothing of going back to work or school, taking a vacation independently, or hosting a house party.

This is not just a "what if" scenario. At gatherings with many blind individuals, the question asked upon meeting another person is often not, "What do you do [for a living]?" but rather, "Do you work?" Although factors such as (lack of) accessibility and support services, among others, plays a role in the high unemployment rate, so does attitude—on the part of both the employer and the employee. Both have to be willing to put in the work, yes; both also need to believe that the job, whatever it is, can be done.

Not to say being blind or visually impaired is easy. In fact, my attitude is that it often takes more work on account of overcoming accessibility barriers, but that extra work is just something I need to do. Just because I have to work harder at something doesn't mean I should simply lower my expectations and never expect to accomplish it, and nor does it make the accomplishment any more amazing once complete. Unless it really is amazing, like winning a medal at the Olympics, which is an accomplishment most people will never achieve. The reality is that low expectations are often the norm, and normal expectations are often considered amazing by society as a whole. This should not be the case, no matter what the disability.

And that is why I am not amazing for reading, for living alone, for going to graduate school, for working full-time, for choosing hobbies such as photography and programming. I shouldn't be amazing for doing these things. These should be normal and expected, not extraordinary! Inspirational, perhaps, if someone chooses to find inspiration in such things. But normal, not amazing.

Monday, July 1, 2013

Today is Canada Day. This year, Canada celebrates its 146th birthday. A pretty new country, in the grand scheme of things. Every day, were I to stop and consider it, I am grateful for being born Canadian; on July 1 my fellow Canadians and I are especially proud (some recent political events aside ...).

Earlier today, someone posted a link on Facebook to a blog post about 50 gifts Canada has given the world. I clicked, and to my pleasure I saw that insulin topped the list. Not only do I live in a country where my basic medical needs will be met regardless of my economic situation, but if it weren't for this Canadian discovery in 1922, I would not be alive today.

In addition to insulin, I learned that a Canadian with low vision invented the first computerized braille translation system in the early 1970s. These days, virtually all braille production is done this way. Among other scientific and medical inventions like the electron microscope and pacemaker, and everyday objects like garbage bags and alkaline batteries, life could be very different without Canada around.

And with those brief thoughts, I'll wish a Happy Canada Day to all my fellow Canadians!

About Me

I'm a thirty-something Canadian who has been legally blind my entire life and has had Type 1 diabetes for over 26 years. In this blog I share my thoughts and experiences living with diabetes, low vision, and a few other health conditions thrown into the mix.